In honor of National Epidermolysis Bullosa Awareness Week, held Oct. 25-31, I want to give readers a glimpse into my daily routines and some personal aspects of my life with epidermolysis bullosa (EB) that few get to see. First, I’d like to describe my daily medication routine. I…
Discussion
In the week leading up to Halloween, advocates around the world will wear their clothes inside out to raise awareness of epidermolysis bullosa (EB). EB Awareness Week runs this year from Sunday, Oct. 25, to Saturday, Oct. 31. The Inside Out campaign is being spearheaded by DEBRA International,…
Discussion
Off-label treatment with apremilast, an oral medication approved for certain inflammatory conditions, helped prevent new inflammatory blisters in an older woman with epidermolysis bullosa acquisita (EBA), a rare autoimmune disease in which blisters form in layers of the skin in response to injury. The 69-year-old woman, who had…
Becoming educated and informed about epidermolysis bullosa is a good first step. Here you’ll find general information about the disease, including diagnosis, symptoms, and causes.
It helps to know others have been where you are now. Here’s a collection of our columnists’ words of wisdom to help you along on your EB journey.
There is no cure for EB yet, but there are treatments that can help manage the disease. Learn more about the approved and experimental therapies here.
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